Tuesday, December 30, 2008

I hope everyone has had a wonderful holiday. During this time of giving, we wanted everyone to know about an important non-profit dysautonomia research fund we have founded.

Many of you who have been following my blog know that I have been struggling with a disease that has disabled me and changed my husband's and my lives forever.

To give those who are just joining us on my blog a summary of what we have experienced, here's a quick recap. I have been severely ill for over 4 years. In 2004, I was an active, healthy 26 year-old emergency veterinarian. It all started with a severe cat bite that landed me in the hospital on IV antibiotics for 3 days. I then began experiencing severe dizziness, blurred vision, heart palpitations, fatigue, pain, and fainting. I was unable to drive, walk for more than very short distances, or stand for more than a few minutes without assistance. Even my memory and concentration were affected to the point where a long conversation would force me to rest for several days.

After 1½ yrs of getting progressively worse, we went to the Mayo Clinic in Minnesota where I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, which is the dysfunction of the autonomic nervous system. POTS is a chronic illness that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia, constant lightheadedness, dizziness, weakness and extreme fatigue. I have never been able to go back to work and have been disabled since my illness began.

This disease has no cure and the cause is unknown. Some cases can be triggered by an illness or insult to the immune system, such as the cat bite, but it is not understood how this happens. Even treatments are only able to give some symptomatic relief, but cannot affect the disease itself.

There is very little research being done on these diseases, so Adam and I have decided that it is important to us to start a fund dedicated to increasing research devoted to dysautonomia and POTS.We have chosen to join with the UNC Medical Foundation of North Carolina, Inc. to develop a UNC-based Dysautonomia Research Fund. This fund will give yearly seed grants to early researchers looking into dysautonomia and POTS. I will be on the board that decides who will receive this yearly grant, and will ensure that the money goes to a candidate looking to further research that can assist those of us that suffer from dysautonomia.

This research could make an amazing difference in the lives of all people with dysautonomia and POTS. We feel that this program will be able to do a huge amount of good and hopefully help to fight dysautonomia and POTS. The more money we can raise, the more research we can fund. If we can raise more than $100,000, we can fund research in many institutions throughout the country. So little is known about dysautonomia and POTS, that every dollar that goes to research is essential. We have seen firsthand how life-altering POTS can be, which is why it is vital more research is done.

If you are able to donate to our Fund, please consider giving as much as you can. We know that economic times are tough right now, but our health depends on research. Thanks so much to everyone who considers giving. All donations are fully tax deductible and 100% of proceeds go to UNC research.

Have a wonderful holiday season!

How to Donate:

If you decide to donate, it would be great if you could email me at lmbutare@wheredidigetthislemon.com so that I can make sure UNC designates the money to our fund. :)

NOTE:**Make sure that you choose "Excellence Fund" under the drop-down menu for “Please designate my gift to.” In the “In honor of” field below that menu, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC. The “alumni” the form refers to is UNC Medical School Alumni, not UNC as a whole.

Check: Make your check payable to “The Medical Foundation of North Carolina, Inc.” and write in the notes section “Excellence Fund, Butare-Smith Campaign.” Then fill out this form and mail it with your check to:

Bank Drafts:print out the form found here:http://www.medicalfoundationofnc.org/donate/autodraft.shtmland mail it to the address listed on the site. **Make sure that you choose "Excellence Fund-non alumni giving" under the question “Please direct this monthly gift to the following areas in these proportions:” In the “In honor of” field at the bottom of that listing, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC.

To pledge to donate: fill out the pledge form and mail it to the address on the form. They will send you an invoice on the date you select. Be sure to follow the instructions above for how to designate your donation.

Why am I doing this?

I have been severely ill for 8 years. I was an active, healthy 26 year old emergency veterinarian loving life and my job. Everything crashed to a halt after a cat bite landed me in the hospital for a few days on IV antibiotics. Severe dizziness, fatigue, pain, and fainting were soon to follow. I had to take medical leave 3 months after I first became ill and was never able to work again.

It took more than 30 doctors, 2 years, and a trip to the Mayo clinic in Minnesota to finally get diagnosed with Postural Orthostatic Tachycardia Syndrome, or "POTS", a type of dysautonomia. I am still severely disabled, but fighting tooth and nail to get better every day. I want this blog to be a resource for others who have chronic "mystery" diagnoses or other chronic disorders that need help organizing their life again.

Bear with me on this blog because I am ill and will not be able to post as regularly as a "normal" person can!